ALL about

What is ?

Epilepsy is a neurological disorder – a physical condition – which causes sudden bursts of hyperactivity in the brain.

This hyperactivity produces “seizures” which vary from one person to another in frequency and form.

A may appear as • a brief stare • a change of awareness • a

A seizure may last a few seconds or a few minutes.

Epilepsy • is not a disease • is not a psychological disorder • is not contagious

Causes In approximately 60-75% of all cases, there is no known cause. Of the remaining cases, there are a number of fre- quently identified causes.

Identifiable Causes • brain injury to the fetus during pregnancy • birth trauma (lack of oxygen) • aftermath of infection (meningitis) • head trauma (car accident, sports injury, shaken baby syndrome) • substance abuse • alteration in blood sugar (hypoglycemia) • other metabolic illness (hypocalcemia) • brain tumor • stroke

Is There a Cure? Although treatments are available to reduce the frequency and severity of seizures, there is no known cure for epilepsy. Complex partial seizure: a person loses awareness as the Seizures seizure begins and appears dazed and confused. The person There are many different types of seizures. will exhibit meaningless behaviours such as random walk- ing, mumbling, head turning, or pulling at clothing. These Most are classified within 2 main categories: partial seizures behaviours cannot be recalled by the person after the seizure. and generalized seizures.

Generalized Seizures Incidence of Seizure Types Generalized seizures occur when the excessive neural activi- ty in the brain encompasses the entire brain. The 2 most common forms are generalized absence seizures and tonic- clonic seizures.

Complex : during this type of seizure a person may Partial 36% appear to be staring into space and his/her eyes may roll Simple upwards. This kind of seizure is characterized by 5 to 15 sec- Partial 14% ond lapses of and, when it has ended, the per- son will not recall this lapse of consciousness. Generalized absence seizures most often occur in childhood and disappear Absence Other Partial 6% 7% during adolescence. They are less prevalent in adulthood.

Tonic-clonic seizure: during this seizure a person will usual-

Myoclonic Other ly emit a short cry and fall to the floor. This cry does not 3% Generalized Unclassified Generalized 3% 8% Tonic-Clonic indicate pain. The muscles will stiffen and the body extrem- 23% ities will jerk and twitch (convulse). Bladder control may be lost. Consciousness is lost and may be regained slowly.

Based on information from: Some medical conditions may cause seizures, these include: Epilepsy — A Comprehensive Textbook, J Engel Jr & TA Pedley, editors febrile seizures (caused by high fever in children), Lippincott-Raven, 1997. withdrawal seizures, and seizures caused by poisoning, aller-

gic reaction, infection, or an imbalance of body fluids or Partial Seizures chemicals (low blood sugar). These are not considered to be forms of epilepsy. Partial seizures occur when the excessive neural activity in the brain is limited to one area. People who have lived with epilepsy for much of their lives may find that their seizures change as they age. The duration The 2 most common forms are: of their seizures may become longer or shorter; the intensity • simple partial seizures and may worsen or improve and seizure episodes may occur • complex partial seizures. more or less frequently. Seniors also demonstrate a high rate of newly-diagnosed cases of epilepsy. Simple partial seizure: a person may experience a range of strange or unusual movements or sensations, such as sudden While there is a 10% chance that a person will experience a jerky movements of one body part, distortions in sight or seizure at some time during their lifetime, a single seizure is smell, a sudden sense of fear or anxiety, stomach discomfort, not considered to be epilepsy. or dizziness. These sensations may be described as an . An aura is a simple partial seizure which can occur alone, or can be followed by a generalized seizure. Postictal States Diagnosing Epilepsy The “ictal” state is the time during which a seizure occurs.

Postictal states commonly follow both tonic-clonic and Diagnosis of a seizure disorder is based on the individual’s complex partial seizures. As a person regains consciousness medical history and diagnostic testing results. after a seizure, s/he may experience fatigue, confusion and disorientation lasting minutes, hours or even days (or, rarely, longer). S/he may fall asleep or gradually become less con- Medical History fused until full consciousness is regained. A physician needs to know when the seizures started, and have a detailed description of an individual’s seizures. The For more information, please contact your local epilepsy family’s health history is also considered. association or visit www.epilepsyontario.org

Diagnostic Tests

Important CAT Scan , is a prolonged or continuous Computerized Axial Tomography, also known as CT seizure state. It can be a life-threatening medical (Computed Tomography) imaging, is a safe and non-inva- emergency. sive procedure which uses low radiation X-rays to create a computer-generated, three-dimensional image of the brain. Status epilepticus can be convulsive (tonic- It provides detailed information clonic or myoclonic) or non-convulsive about the structure of the brain by (absence or complex partial). A person in non- using a series of X-ray beams to scan convulsive status epilepticus may appear con- the head to create cross-sectional fused or dazed. images of the brain. These may reveal abnormalities (blood clots, cysts, If a seizure lasts 5 minutes or more, or occur one tumours, scar tissue, etc.) in the brain after another without full recovery between which may be related to seizures. seizures – immediate medical care is required. This allows physicians to examine Call 911 this structure, section by section, as the test is being conduct- ed. The CAT scan helps to point to where a person's seizures

originate.

SUDEP Sudden Unexpected Death in Epilepsy EEG The exact cause of this syndrome is unknown, and yet accounts An electroencephalogram is a non- for 12–15% of sudden deaths among people living with invasive test which detects and epilepsy. It most often strikes those between 20 and 40 years of records electrical impulses on the sur- age who have experienced seizures for more than a year. face of the brain. These impulses are transmitted from small metal discs, Additional research and greater awareness about SUDEP is placed on the person’s scalp, through necessary. Autopsies reveal that 50% of affected patients had wires which are connected to an elec- AED blood concentrations either below therapeutic levels or troencephalograph. This instrument in completely undetectable amounts. It is unknown whether is used to register this activity and this is a result of poor compliance or metabolic issues. record it on graph paper or on a computer screen. This is a safe and painless procedure. areas that may generate seizures. No X-rays or radioactive materials An EEG is used by a neurologist to determine whether there are used, therefore this procedure is is any irregular electrical activity occurring in the brain not known to be harmful. which may produce seizures. It can help identify the loca- tion, severity, and type of seizure disorder. Because seizures can arise from scar tissue in the brain, an MRI offers An abnormal EEG does not diagnose epilepsy nor does a doctors the best chance of finding normal EEG reading exclude it. the source of seizures. An MRI can show scar tissue and allow doctors to determine the nature of it. The images pro- duced from the MRI are extremely precise. The information MEG/MSI provided by MRI is valuable in the diagnosis and treatment Magnetoencephalography, also of individuals with epilepsy and in determining whether sur- called Magnetic Source Imaging, gery would be beneficial. is a non-invasive scanning tech- nique which provides information about the function of the brain. It MSRI is a safe and painless procedure Magnetic Resonance Spectroscopic Imaging is similar to that detects small biomagnetic sig- MRI but while MRI looks at the signals detected from the nals produced by the brain, record- protons of water in the body, MRSI looks at the signals ing magnetic fields over the surface detected from other proton-containing metabolites. of the head. These signals provide information about the location of active brain areas. This technique allows doctors to investigate how different areas PET of the brain interact with one another. Positron Emission Tomography is a scanning technique which detects MEG can help to identify brain zones which emit abnormal chemical and physiological electric currents associated with epilepsy. It can “see” the changes related to metabolism. It magnetic fields associated with sensory areas of the brain by produces 3-dimensional images of stimulating the senses during MEG recording sessions. It blood flow, chemical reactions and views the brain zones which control language by having the muscular activity in the body as patient perform linguistic tasks during an MEG; and, identi- they occur. It measures the intensi- fy the brain zones associated with learning and memory by ty of the use (metabolization) of glucose, oxygen or other having the patient perform cognitive tasks during an MEG. It substances in the brain. is useful in planning surgical treatment of epilepsy and for pre-surgical functional mapping of the brain. It quickly pro- This allows the neurologist to study the function of the brain. vides high resolution images of the brain, used to compare By measuring areas of blood flow and metabolism, the PET function in relationship to behaviour. scan is used to locate the site where a seizure originates.

The PET scan provides information about metabolic activi- MRI ties, chemistry or blood flow by detecting how quickly tis- Magnetic Resonance Imaging is a safe and non-invasive sues absorb radioactive isotopes. During a PET scan a small scanning technique that uses a magnetic field, radio waves, amount of radioactive substance is injected into the body. and a computer to produce two or three dimensional images When this substance reaches the brain, a computer uses the of the brain. This detailed picture of brain structures helps recorded signals to create images of specific brain functions. physicians locate possible and identify A functional image of brain activity is important because functional changes often appear before structural changes in tissues. Treating Epilepsy

Drug Therapy The information provided by a PET scan is valuable in the Many seizures are controlled by anti-seizure medications, diagnosis of seizure type and in the evaluation of a potential sometimes called anti-convulsants or anti-epileptic drugs candidate for surgery. PET images may therefore demon- [AEDs]. strate pathological changes long before they would be made evident by other scanning techniques. Monotherapy (using 1 drug), or polytherapy (using a com-

bination of drugs) may be prescribed by your doctor. Different types of seizures require different medications. Functional MRI Some medications may produce numerous and unwanted Similar to PET, a functional MRI provides information about side effects. active brain tissue function and blood delivery. However, it is more precise in temporal and spatial resolution. It is an ideal tool in pre-operative planning because it can reveal the Response to Medication exact location of the seizure area. On average, 70% of seizures are successfully controlled with

one anti-epileptic medication. The remaining 30% of seizures are, thus far, resistant to medications. SPECT

Single Photon Emission Computed Tomography is a func- tional imaging technique which creates 3-dimensional History of Medications images of the brain on a computer, allowing physicians to For more than 100 years, various kinds of medications have visualize blood flow through different areas of the brain. been used to treat seizure disorders. 1861 – Bromides Individuals with epilepsy often have changes in blood flow The first medication used to control of seizures. Side to specific areas of the brain when a seizure begins. By meas- effects were severe. uring blood flow, the SPECT scan may help to identify where 1912 – Phenobarbital seizures originate. This test provides information about how Effective, but sedating. well the various regions of the brain are functioning by 1936 – Phenytoin measuring relative cerebral blood flow. This information Known as the "miracle drug" of its day. helps a physician to more accurately diagnose the type of Today – Many new medications are available, including a seizure, locate the site where a seizure originates, and evalu- number approved since 1990. ate a potential candidate for surgery. The Future – Research continues to be done in an effort to find a safe, effective anti-convulsant. The radiation exposure from a brain scan is minimal. It is in the range of 1 to 3 times your annual exposure to natural background radiation. Vagus Nerve Stimulation Vagus Nerve Stimulation (VNS) involves periodic mild elec- trical stimulation of the vagus nerve in the neck by a surgi- Testing equipment is constantly improving but is not cally implanted device similar to a heart pacemaker. available in all areas. For more information, consult your specialist, your local epilepsy association, or your VNS has been effective in controlling some when provincial Ministry of Health. anti-epileptic drugs have been inadequate or their side effects intolerable, and neurosurgery has not been an option. Common side effects, which occur only during stimulation, may include a tingling sensation in the neck and/or mild Facts about Epilepsy hoarseness of the voice. Other possible side-effects may Age include coughing, voice alteration, shortness of breath, tran- Epilepsy can develop at any age. sient sensations of choking, throat pain, ear or tooth pain, and skin irritation or infection at the implant site. Unlike many About 50% of new cases of epilepsy begin in childhood and medications, there seems to be no significant intellectual, cog- adolescence, with the highest incidence during the first few nitive, behavioural or emotional side effects to VNS therapy. months of life. Many people who develop seizures during their childhood or adolescence tend to experience a reduc- VNS is approved in more than 20 countries, and is now the tion in the intensity and frequency of seizures as they second most common treatment for epilepsy in the USA. approach adulthood.

Ketogenic Diet There is also a sharp increase in incidence later in life, with some studies showing almost 25% of new cases of seizures This strictly supervised diet is prescribed for children. The diet occurring after age 60, perhaps as a result of small strokes. is high in fat and low in carbohydrates. In many of the chil- dren who stick with the diet, seizures are brought under con- trol and are eliminated - sometimes permanently. Prevalence

It is estimated that approximately 1% of the population have Surgery had, or will have, some form of seizure disorder during their lifetime. That’s possibly as many as 1 person in 100. Surgery may be an option for the 30% of epilepsy cases that do not respond to medication. Surgery is used when the injured brain tissue causing the seizures can be identified and safely removed without damaging psychological or Population in Ontario: more than 13 million. major body functions. This applies only to a small percent- Ontario is home to about 1 in 3 Canadians. age of persons living with epilepsy. There are as many as 130,000 people in Ontario living with a seizure disorder. Different types of operations may be performed, and gener- ally fall into 2 main groups: • removal of the area of the brain that produces the seizures;

• interruption of the nerve pathways along which seizure Genetics impulses spread. About 30% of seizures relate to a clear-cut abnormality in the brain. In the other 70% of cases the brain appears nor- mal. In these cases, genetic causes are suspected. Multiple genes are involved, however, and inheritance does not fol- low simple Mendelian rules.

Medical Assistance If you think that you or any member of your family might have a seizure disorder, contact your family physician. You or a family member may be referred to a neurologist, depend- ing on individual circumstances. If any of the following conditions are met, a person with a Living with Epilepsy seizure disorder may drive. • febrile are limited to early childhood Epilepsy can carry with it a host of social and psychological • seizures were the result of a toxic illness which is now problems. Friends’ and family’s lack of understanding about completely cured seizure disorders is often due to ignorance and/or fear. This • seizures appear to be prevented by medication can sometimes lead to overprotectiveness or imposition of • the person has been free of seizures for 12 months unnecessary restrictions on the individual. and medication does not cause drowsiness or poor co- ordina- tion Other personal issues may include insecurity, anger, frustra- • the person has had a solitary seizure that cannot be relat- tion and depression. ed to a toxic illness, and has provided a full neurological

examination revealing no epileptiform activity • the person has had seizures only during sleep or immedi- Obstacles to Employment ately upon awakening for at least 5 years • the person has been seizure free on medication for 1 Individuals with a seizure disorder who are physically able year, and seizures recur because of the cessation of to work are often unemployed or under-employed. Of those medication following a physician's instructions. with jobs, many have to accept positions well below their levels of education and ability. The primary reasons for this are: More Information • employer apprehension Contact your nearest Drive Test Centre - www.drivetest.ca - • discrimination against people with seizure disorders. or Ontario’s Ministry of Transportation for more informa- tion about: • applying for a beginner driver's licence Public Awareness • applying for a commercial licence • suspension of a driver's licence For many, it is not the seizure disorder itself, but negative • appealing a licence suspension public attitudes which create a greater disability. Public • any other driving-related issue. information and education are vitally important to elimi- nate societal prejudice.

School

General Guidelines Driving Students with seizure disorders can progress normally through growth and developmental stages. They are active In Ontario, the Ministry of Transportation - www.mto.gov.on.ca and are interested in the same activities as their peers. They makes all decisions about drivers’ licences. should be encouraged to take part in all regular school activ- ities, including sports. Who May Not Drive

• any person with uncontrollable seizures • any person who has had seizures in the past 12 months Problems at School • any person who is presently taking anti-seizure medica- If a student with a seizure disorder is experiencing academic or tion which causes drowsiness or poor muscle control social problems at school, assistance is available. For academ- • any person who requires medication to prevent ic problems, ask to see the Special Education Consultant for seizures but persistently drinks alcohol to excess, or who your area, or contact your local epilepsy association agency. does not comply with a physician's anti-seizure medication recom- mendations.

Financial Assistance

Canada Pension Plan (CPP) The Canada Pension Plan provides for the payment of dis- ability pensions to eligible CPP contributors and for the pay- ment of benefits to their dependent children.

Eligibility To be eligible for a disability pension from the CPP, an appli- cant must: • be disabled according to the terms of the CPP legislation • have made sufficient contributions to the plan • be less than 65 years of age

Employment Disability Conditions The disability must be a physical or psychological impair- Career Goals ment that is both severe and prolonged. That is, the disabil- The majority of individuals with seizure disorders are able to ity must seriously affect the contributor’s ability to earn an enjoy meaningful employment. In fact, it has been demon- income, and must be likely to do so for more than a tempo- strated that people with epilepsy are often more productive, rary period. with less absenteeism, than their peers. Contributory Requirements It is important for young adults with seizure disorders to Generally, according to the web site of Human Resources work with their school’s guidance department to establish Development Canada, contributions must have been made meaningful and appropriate career goals. There are programs in 4 of the last 6 years of the contributory period. During designed to assist in training and employment. These change that period, you must have earned at least 10 per cent of each regularly. Contact your local epilepsy association agency for Year’s Maximum Pensionable Earnings (YMPE). Visit Service the most current information. Canada. www.servicecanada.gc.ca

Applications Applications should be made as soon as the disability con- dition seriously affects an individual’s ability to earn and if it will last more than a temporary period.

Information More information about CPP Disability Pensions can be obtained from an Income Security Programs Client Service Centre. Telephone numbers and addresses are listed in all telephone directories under “Human Resources and Skills Development Canada, Income Security Programs”. www.hrsdc.gc.ca

Ontario Disability Support Program Persons with seizure disorders who are unable to work may apply for income or employment support through the

Ontario Disability Support Program of the Ontario Ministry of Community and Social Services. Contact your nearest regional office for more information. www.mcss.gov.on.ca

Emergency Assistance Emergency short-term financial assistance may be available from Ontario Works. Contact your local municipal Ontario Works office for current information. Visit the Ministry of Community and Social Services. www.mcss.gov.on.ca

Drug Benefit Program Special assistance is available for anyone who has extraordi- nary drug costs, such as high prescription medication costs. A special needs assessment is completed for each applicant. Support Services Eligibility is based on monthly income. Apply through the Ontario Drug Benefit Program, A broad range of support services are available through Ontario Ministry of Health and Long-Term Care, or your Epilepsy Ontario and our network of affiliated local epilep- local municipal Community Services department. sy association agencies.

Some of the many programs and services which improve the Trillium Drug Plan quality of life for people living with epilepsy include: The Trillium Drug Plan is a supplementary insurance pro- • information and education services gram offered by the provincial government. It is for people • toll free information phone line whose drug costs are not fully covered by a private insurance • literature/videos/multimedia plan and who spend a large part of their income on prescrip- • Resource Centre and lending library tion medications. Coverage is based on family income and • Kids on the Block™ puppet troupes for children in expenses. It covers the costs of drugs listed in the Ontario kindergarten through Grade 7 Drug Benefit Formulary. Medications not listed in the • “Perfection” interactive play for youth and children Formulary may be covered if your prescribing physician sub- • speakers bureau mits a request under the “Section 8 Mechanism”. • provincial and local newsletters www.health.gov.on.ca • medical forums and conferences • workshops about employment, etc. • children’s camp and Summerfest Travel Grants • counselling and referral services Travel grants are available for persons who must travel dis- • advocacy and human rights support tances of more than 200 kilometres each way for medical • support groups attention. A doctor's referral is required. Grant applications • OBCL Scholarships are available through a family physician and may be submit- • tips about living with epilepsy ted after each trip. • service dogs, trained to assist those with severe seizure disorders When reserving tickets for travel, check with the carrier's cus- • agency/contact development tomer service department: many modes of transportation offer special fare discounts for those with a doctor's certificate. Many * Please note: Services vary from region to region. offer free transportation to a medically-required attendant. Not all of these programs and services are available in every region of Ontario. Check for a MedicAlert™ bracelet or other First Aid for Seizures medical ID Tonic-Clonic (Convulsive) Seizures • The bracelet or necklet may indicate the seizure type and any medication the person is taking. If you call Keep Calm. the MedicAlert hotline, an operator can direct you in first • Seizures may appear frightening to the onlooker. aid procedures and may direct you to call emergency • Seizures usually last only a few minutes and generally do contacts and physicians listed in the member’s file. not require medical attention. • Remember that the person having a seizure may be If a child experiences a seizure, notify the unaware of their actions and may or may not hear you. parents or guardians Protect from further injury. • If necessary, ease the person to the floor. Complex Partial Seizures • Move any hard, sharp or hot objects well away. • Do not restrain the person. • Protect the person's head and body from injury. • Protect the person from injury by moving sharp objects • Loosen any tight neckwear. away. • Do not restrain the person. • If wandering occurs, stay with the person and talk quietly. • If danger is imminent, gently guide the person away. • Agitation during seizure episodes is common. Absence Seizures & Simple Partial Seizures • Trying to restrain or grabbing hold of someone having a • No first aid is required. seizure is likely to make the agitation worse and may trig- • Reassure the person. ger an instinctive aggressive response. Do not insert anything in the mouth. • A person will not swallow their tongue. Seizures - Things to Remember • Attempting to force open the mouth may break the teeth or cause other oral injuries. When you see someone having a seizure, do not be fright- • If a person starts to bleed from the mouth, do not panic. ened. Remain calm and remember: They probably have bitten their tongue and are not bleed- • Once a seizure has started, you cannot stop it – just let ing internally. it run its course. • During a seizure, a person often stops breathing for only Roll the person on their side after the seizure a few seconds. subsides. • If a person starts to bleed from the mouth, s/he has prob- • This enables saliva to flow from the mouth, helping to ably bitten their tongue and is most likely not bleeding ensure an open air passage. for any other reason. This can be taken care of after • If there is vomit, keep the person on their side and clear the seizure ends. out their mouth with your finger. • Most seizures last only 1-2 minutes, although the If a seizure lasts longer than 5 minutes, or person may be confused for some time afterward. repeats without full recovery – SEEK MEDICAL • The brain almost always stops the seizures safely and nat- ASSISTANCE IMMEDIATELY. CALL 911. urally. • Although this rarely occurs, status epilepticus is life- • Only in emergencies, doctors use drugs to bring a threatening and is a serious medical emergency. non- stop seizure to an end. Talk gently to the person. • People don’t feel pain during a seizure, although muscles • After any type of seizure, comfort and reassure the person might be sore afterward. to assist them to reorient themselves. • Seizures are usually not life threatening, but the risk • The person may need to rest or sleep. is increased in seniors by extra strain on the heart, the • If the person wanders, stay with them and talk gently to pos- sibility of injury, or reduced intake of oxygen. them. • Seizures are not dangerous to others. Notes

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